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03-10-2013, 10:59 AM
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#1
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Preparing & Praying!!
Hello Everyone...I'm VERY new and have been reading your posts/comments, etc...
I've had quite a ride the last several months...from finding a lump on right breast, biopsy...DCIS to lumpectomy, no clear margins, another reexcison, same report, then a mastectomy...decided to go with reconstruction, then at followup, found out my incision was infected, that I needed to have it repaired with the expander removed immediately.
Same time, also had pathology report with my final diagnosis:
Stage 2a breas cancer , 1 of 5 lymph nodes positive, (removed), found a 2.7cm tumor in the upper outer quadrant, (removed)...
The tumor was NOT detected until I had my mastectomy.
Tomorrow, I am to have my port placed, Thurs, Mar 20, meet my Medical Oncologist for my treatment plan...the PRAYFULLY I will get started with my journey and get this going to have a TESTIMONY LORD WILLING!!
The unknown has been sooooo stressful...as I wait...I am told by my BS that my treatment will be TCH for 8 weeks, followed with Herceptin for a year. We will see if that is the same plan with my medical oncologist.
I am ER/PR negative...HER2+ (+++)
I get all my medical treatment through the VA, thus I am VERY blessed...however, there are pro's and cons.
THANK YOU SO VERY MUCH FOR READING MY STORY!!
ANY FEEDBACK IS MUCH APPRECIATED!!!
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03-10-2013, 12:39 PM
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#2
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Preparing & Praying!!
Hi Dear. I am sorry to her that you are going through this. I think the first days and weeks are the hardest. Wrapping your head around. The diagnosis and all the uncertainties that goes along with this. I found once I had a good treatment plan in place and a great medical team, I felt a bit better. It's perfectly normal to be blindsided and have down feelings. It's all a process. I am also er/ pr negative and her2 strongly positive. I was literally hit over the head with my diagnosis almost 8 years ago. Thankfully Herceptin had just been made available ( for non met cases ). Despite poor prognosticators I am now well and living life large. You will too, time will pass, treatments will be memories, you will wake up without thinking of first of BC and you will get through it.
God Bless.
Linda
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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03-10-2013, 12:59 PM
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#3
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Senior Member
Join Date: Mar 2012
Posts: 61
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Re: Preparing & Praying!!
What a ride, huh? My story is very similar to yours, minus the reconstruction. The biggest thing I've learned is that cancer doesn't play by any rules. We need to learn to take one step at a time, and make the best informed decision at the moment. We can't look back and think "I should have..." because it doesn't help anyone. Chemo isn't a walk in the park, but you already are learning how strong you can be when you have to be. I was terrified of the port procedure and it turned about to be no big deal. I was sore for a few days and kind of mad because I was already sick of being sore, but I am thankful for it more times than I can say.
Wishing you minimal side effects and here's a big hug!!!
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03-10-2013, 02:49 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Preparing & Praying!!
Hi Susan,
I dreaded having a port and didn't have one fitted until half way through my chemo and really wish I had had it sooner as it really became my best friend and saved me so much stress when my veins refused to work! I was just a little sore for about a week and then it settled down, you've been through a lot but each day is bringing you to the end of this so good luck and do keep us posted!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-10-2013, 03:53 PM
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#5
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: Preparing & Praying!!
I had my port in put in during the lumpectomy....and I will be damned if they take it out of me. i love my port. I hate needles and have to go through an entire ritual to get blood drawn through my arm. But with my port, I don't feel a thing. My oncologist wants me to get it removed because I now am done with treatment. But I am holding onto it until I am done with my trials. It just makes life SO much easier.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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03-10-2013, 04:46 PM
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#6
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Preparing & Praying!!
Hi Susan,
Welcome to this fabulous site!
As you go through some of the stories posted by all of us, you will realize you are in the right place for information, support and the latest about breast cancer treatments.
Feel encouraged by some of us who have dealt with this disease for a long, long time.
Please do not hesitate to send us a line anytime, we are here for you.
The best of luck in your upcoming treatment(s), and keep up the faith. I will pray for you.
Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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03-10-2013, 05:42 PM
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#7
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Preparing & Praying!!
Welcome, Susan, you have just joined a wonderful group of people from the world over. Best darned online support group goin'! IMHO. Stick around learn and live along with us.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-10-2013, 07:50 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Preparing & Praying!!
Welcome Susan! Come here often for support, understanding, knowledge, to vent or celebrate. You will always find someone to share your journey.n
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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03-10-2013, 09:08 PM
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#9
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Preparing & Praying!!
You ALL have been such a huge blessing of encouragement today!! "
I'm soooo humbled and grateful for such support!!
Here in Nebraska...we've once again had an unexpected snow fall...more than we thought...therefore, I will have to reschedule my port placement. Hopefully, I will still be able to meet my Medical Oncologist this Thursday...just so much going on...
This JUST might be a good thing waiting on the port as I haven't felt the best the last few days, and I KNOW I'll need all the energy I can get for my next turn!! "
Thank you so much, I know I have already found some AWESOME new friends!!
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03-10-2013, 11:56 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Preparing & Praying!!
Hi Susan,
Hope you are staying warm at home.
My surgery/treatment almost six years ago (June 2007) was very similar to yours. The tumor was about 2.5 cm with 2 lymphnodes containing cancer cells. Because it was a recurrence and because cancer incidents of other family members, I had a genetic test done and later had a prophylactic hysterectomy/oophorectomy. It's the best decision I'd made as I've been feeling so much better (no longer having peeled skin on my lips - surgeon had told me the uterus already was showing hyperplasia...)
You've sure been through a lot in such a short time period. Herceptin + chemo (TC) has been proven to be effective in treating Her2+++ breast cancer. Be sure to read the Nutrition section (where exercise has been discussed as well) and get yourself strong for the upcoming treatment.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-11-2013, 05:06 AM
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#11
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Preparing & Praying!!
Susan,
Welcome! Sorry you had to find a BC support group...but I agree with my friends here...you have undoubtedly come to the right place. You will find unbridled love and support here. And, just as important (IMHO) you'll find great info about treatments, side effects...and stories of hope, life...and moving on!
Chemo is definitely do-able. Just keep reminding yourself to put one foot in front of the other...and keep plodding through. It will be over in no time...a memory...
And...like a lot of our 'HER2 sisters' it will be a distant memory before you realize it!
Good luck digging out of the snow...and with your new med onc!
Check in again soon!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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03-11-2013, 05:47 AM
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#12
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Banned
Join Date: Nov 2012
Posts: 17
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Re: Preparing & Praying!!
Susan--as you prepare for chemo, ask your doctor about monitoring HER2 in your serum. you can learn more at www.oncogene.com. A new article is discussed in the March blog at www.hertestonline.com |
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03-11-2013, 09:44 AM
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#13
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Preparing & Praying!!
Just to say welcome Susan. It's always easier to get through a challenge when you have friends who have already been there. That's us! When it gets closer to treatment day we can give you handy hints to make things as comfortable as possible. Keep the faith
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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03-11-2013, 09:51 AM
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#14
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Preparing & Praying!!
Hi Susan,
Sorry you had to join the club that no one wants to belong to - but it is a great support group, as you have noted.
FYI - I had a clean mammogram and ultrasound in July 2006, and then had a breast reduction in October 2006 - my plastic surgeon found (and removed) the tumour - that's how my BC merry-go-round began... As others have said, the shock of the diagnosis and the uncertainty at the beginning of it all does get better once you have your treatment plan in place.
My number one bit of advice is to take all the help you can - if your friends/neighbours want to drop off a casserole, do your grocery shopping, entertain your kids for a few hours - let 'em. This is no time to be a hero. You need to focus all your energy on your treatment and recovery.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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03-11-2013, 03:20 PM
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#15
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Senior Member
Join Date: Jan 2013
Location: 'Burbs of Atlanta, GA
Posts: 172
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Re: Preparing & Praying!!
Europa - You are so funny about not giving your port up. When I got my port I was scared of the mere thought of it - but it has turned out to be great. I don't even notice it now.
I noticed you are in the vaccine program for HER2 at Walter Reed. How did you get into it? I am at the beginning of chemo and herceptin - but I am already thinking long term
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03-11-2013, 05:45 PM
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#16
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: Preparing & Praying!!
I'm with Europa - love my port, don't even know it's there
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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03-11-2013, 10:46 PM
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#17
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Preparing & Praying!!
Thanks so very much again for your wonderful encouragement!! Amazing women I'm meeting with stories to share!
I'm ready to get going...get healthy...get the port...FINALLY meet my Medical oncologist...
Oh, I guess I forgot to mention, during my mastectomy, while I was being intibated, a lesion was noticed on my vocal chord!! JUST what I DON'T need now...have a consult with ENT March 20th...TRUSTING GOD!!! GEEEZZZ...
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